a weeks worth of updates...

Hello and thanks for checking in. I am sorry that I haven't posted for so long, no excuses...so let's get to it.
I am on the new medication now. I have noticed no improvements, yet. We must be reminded that it is a gradual process, I am not up to a full dose yet, and it could be many weeks before the effects present themselves.

I met with a new physical therapist. It is a new approach to treatment but my mind is open to what it has to offer. The first meeting she taught me the importance of breathing, diaphragmatic breathing. Here is a little snip it from a handout she gave me regarding this:
"For a moment, think of the word "stress" as any stimulus that engages us in life such as eating, bathing, working and socializing. When we perceive a situation or thought as threatening in any way, it can become dis-stressing, In these moments or over time, our breath can adapt to cope with the distress. We often adopt a "survival" breathing pattern, where we use little of our diaphragm muscle and mostly upper chest, shoulder and neck muscles. This pattern will continue to limit the movement of the primary breathing muscle, the diaphragm and create tightness and exhaustion in the muscles in our upper body. Over time this will limit our oxygen intake, create excess muscular tension and compromise our immune system."
I have physical therapy scheduled twice a week over the next six weeks. I will keep you posted on the outcome of this new approach.

Last week I had a great meeting with my boss. Near the end of the meeting I was telling her that we were coming up on the two year mark of my diagnosis and how I continue to try and figure out what my "new normal" will be and she helped me tremendously by asking me to take the same approach with my health that I take in my work. In my work, I don't try and figure it all out before I get started, I just start. I tweak and adjust along the way but keep moving forward. She suggested I try that with my life outside of work. Stop trying to figure out the disease. Just live and tweak and adjust along the way but keep moving forward. I'm taking her advise.

Many of you probably received my email regarding my myositis t-shirt campaign. I kicked that off last night by sending an email to virtually everyone in my email distribution with the hope that it will be forwarded around the world and people will be wearing myositis shirts and raising awareness. Thank you in advance for your help with this effort. I am also looking forward to sharing this campaign with the congregation at Our Savior in Whitefish Bay, my coworkers at PyraMax Bank and my Saturday morning weight watchers group. These presentations will be in person so wish me luck on that.

What else did I want to tell you....
I am reading "A New Earth" by Ekhardt Tolle. It's very heavy reading. I struggled in the beginning to keep reading but as I get nearer to the end I am having a hard time putting it down. It's about living in the "Now". It's about being present and not letting the past or the future rob you of this moment. Just yesterday I read the powerful word's "this too shall pass" and although I always used that as comfort in a bad situation the reality is it belongs to every moment, even the good ones. Take each moment, learn from it and move with courage and confidence into the next moment. The book encourages it's readers to say the words "I am."
Did you notice there is not a blank to be filled in? Not, I am a mom. Not, I am a wife or a daughter or a sister or a manager or anything else....just "I am" You can't go wrong.
I am obviously not the author. I would however encourage you to read the book regardless of what I just said in the above paragraph. Somethings just can't be explained.

Today, I did not go to work. I struggle with that. I love what I do. I enjoy being there and I feel as though I am making a contribution. When I can't go, I feel defeated. I feel like I am letting the disease get the best of me. Now, if I take the advise of my boss and keep moving forward it's OK that I need today to rest. If I take the words of the book, this is just a moment...a moment to be lived, enjoyed and appreciated, "this too shall pass".


I am going to sign off now. I should rest and practice my diaphragmatic breathing.
Have a wonderful day.
Kris B